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Shower Time

A new multiple sclerosis skill

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People not living with multiple sclerosis or another chronic illness can’t possibly understand the fatigue we talk about unless they have actually spent hours trying to find the energy to take a shower.

It doesn’t matter if my achy body slept in til 11 or I had to get up at 7 for Mass.  (What is up with 8:30 Mass?  My Christian friends might disagree with me but my reading of scriptures says that worship is not appropriate until the worshiper is wide awake, usually after 10:30.)

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The plan for this particular day included finishing (and actually starting too) a writing project I had known about and been thinking about for months.  It was due at midnight. Showering helps me think through ideas but getting into the shower has become a lot of work lately.

It shouldn’t be.  Especially on this day.  This was to be a quick shower. I wasn’t going anywhere besides my desk.  I didn’t need to wash, condition or style my hair.  I didn’t need makeup.  All I needed today was a quick rinse, soap, rinse again, and dry.  Easy.

I probably didn’t even need a shower except that for me, my secondary illness is germaphobia so going without is out of the question.

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I drank my tea.

I ate my breakfast.

I answered my emails.

I sorted through my daily meds.

I made my bed.

I posted a funny baby video to Facebook.

I watched a DIY video on how to make a cheap bed for my dog which was pretty silly since I don’t have a dog.

I thought about my writing project.

I thought about why taking a shower is so exhausting.

I started this blog.ID-100165569

What makes a shower so exhausting?  Is it the standing? The water temperature? The slip and fall concern?  Is it the multiple steps even if the multiple steps are so simple we should be able to do them without even thinking about them?

I really didn’t know but I had to figure it out.  I had things to do and they started after I finished my shower.

I thought that music might help through the getting clean process and so I turned on the Music Choice channel.  I normally go for classic rock but today the 80’s felt like better shower music.

The channel was playing Too Shy by Kajagoogoo.  The music notes said that the lead singer left the band to pursue a solo career in the 80’s.

“Well how did that work out for you Limahl?” I snickered.

Before I knew it, I was Googling Limahl.  Turns out his solo career went fine.  But he was definitely cuter in the 80’s.

me capturing the 80s

me capturing the 80’s

Then again, weren’t we all?

I  v— e—r— y  s—l—o—w—l—y headed to my bathroom.  It was shower time.  Since I had 80’s music on shower time turned into Hammer time which made me think of MC Hammer.  Thus, that was the song in my head when I finally got into the shower, over three hours after waking up initially.

Taking a shower should be automatic and NOT a big deal.  It is such a minor part of my day that I don’t even write it down on my “to do” list; and I write EVERYTHING down on my “to do” list.ID-10094176

Post a funny baby pic to Facebook– scratch that right off.  Done and done!

In the years before MS symptoms started rearing their ugly and obnoxious head, taking a shower was how I kick started my day, not something I had to work up too. But multiple sclerosis can change many things both huge and insignificant.

Still, I refuse to let MS completely beat me up. Whenever possible, I go for the positive.

Now dressed and back at my computer and finally starting my writing project a thought occurred to me.  Yes, it was ridiculous how long it took me to do such a routine task.  But look at all the things I accomplished in the meantime.

Those cute baby videos don’t post themselves you know!

Come to think of it, I was pretty impressed at the things I had done while I procrastinated the soap and water part of my day.ID-100127363Back in the old days I didn’t have such procrastination skills. Procrastinating meant zoning out in front of the tv while some sitcom I had seen hundreds of times broadcast canned laughter.  I would literally be a useless clump of procrastination nothingness.

Now look at me!  It takes quite the skill to be able to procrastinate at this level.  It is not for the weak or faint of heart.

Neither is MS.

I decided that this skill I’ve developed since my diagnosis is nothing to disregard.  I’ve entered into an elite society of professional procrastinators and I couldn’t be prouder.

I don’t want to pat myself on the back too much but MC Hammer’s words lingered in my brain.

Hey you regular, amateur procrastinators- “You Can’t Touch This!”ID-10056127

March is MS Awareness Month and we only have a couple of weeks left!  If you like your awareness brought to you with a giggle then please check out my book, MS Madness!  A “Giggle More, Cry Less” Story of Multiple Sclerosis.  You will definitely giggle.  It says you in the title!

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Scary Brain, Scary Movie

Multiple Sclerosis meets HALLOWEEN

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I didn’t mean to break my promise a couple of weeks ago; the promise where I swore I would post a new blog soon.  Technically I haven’t broken anything.  My definition of soon can be very different from your definition of soon.  

But I am working on it and hope to have a new blog out, well, soon.  In the meantime, with Halloween right around the corner, I thought I would repost one of my oldest and most popular blogs.  

Get your dvds and some popcorn- we’re going to the movies!

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It is the afternoon and I am shuffling around my house, trying to focus.

I have my lists; all the MS helpful tip books suggest lists.

There is the to-do-this-week list.

There is the to-do-before-Christmas list and the things-I-should-try-to-do-in-general list.

There is, of course, the things-I-should-try-not-to-forget list.

But the lists and lists were not helping me focus. Oh, I know, the dishes need to be done. I will feel better when I have finished that.ID-100236758

So I start with the dishes and realize I might have more motivation if I had music going. I dry my hands and head to the stereo. But then I see my computer and try to remember if I responded to that important email I received this morning.

Yes, I see now that I did but there are some more emails to read. I get overwhelmed with the amount of junk emails and chain emails coursing through my web account and give up, deciding to play FreeCell instead.

What is up with us MS’er’s and FreeCell? Every MS’er I know is addicted to FreeCell.ID-100237073

My meds are giving me an awful taste in my mouth so I get up to brush my teeth and drink some water.

I see that I barely started the dishes and dunk my hands in the soapy dishpan yet again. And three plates and five minutes later the 8ozs of H2O has gone right through me and I am off to the bathroom. How on earth am I supposed to drink eight more glasses today?

I might as well move into my bathroom.

The fog in my brain continues. The only thing I can focus on is my lack of ability to focus. I am forever existing in this fog-like state. Perhaps because Halloween has just passed I think of the movie The Fog.ID-100362053Figures. Leave it to me to equate my multiple sclerosis to a horror movie.

But is The Fog the right horror movie? I am wandering around lost in my own little world and not feeling quite right- almost zombie like.

Yes, zombies.  Zombies are a good description. I am an MS zombie for sure. I will likely stay like this until I fall asleep where I will be alive but dead to the world for at least ten hours. Then it hits- it’s not The Fog but Night of the Living Dead.

Somehow thinking of my MS in terms of horror movies brings me comfort as I try to remember what it is I was supposed to be doing. Night of the Living Dead, that is definitely the horror movie for sure.ID-10096210

Or is it? Sometimes I just want to scream. Actually, I just want to scream a lot. Maybe my MS really is Scream? I have always been a Neve Cambell fan. But does the movie Scream completely reflect all that my MS is to me?

It likely depends on what my MS is doing on any given day. Often, it makes me think I am going crazy. I think of the classic line in Psycho, “she just goes a little mad sometimes. We all go a little mad sometimes.”

I remember all the hysterical mood swings and weird symptoms I experienced before I knew I had the disease. I remember hundreds of times of being convinced I was getting the flu due to the insane body aches, only to have them disappear, believing myself to be a hypochondriac.ID-100225595I remember the all the people in the world around me being totally off kilter but acting as though I was the one who was screwed up. Like when I had to go to my drycleaner’s several times in one week insisting that they had given me the wrong pants.

“Yes, they fit. Yes, they are the same color. Yes, they have the same fashion label and size label. But these pants have cuffs at the bottom hems. My pants don’t have cuffs. Yes, of course I would know if they were my pants or not. I will keep them as I need black work pants but one day soon someone is going to come in and say they have the wrong pants and I am telling you, I have theirs and they have mine. Feel free to call me when that happens and I will exchange them.”

My drycleaner and I had this little diatribe over and over. Funny how the other customer never realized she had the wrong pants.

Yes, Psycho is the movie. That is the one that most describes my MS. And it is appropriate and personal as when I was a teenager I had actually waited on Anthony Perkins at a candy store only ten days after seeing Psycho for the first time. My friend Heather worked at the store too and she was too freaked out to wait on him so it was left up to me. I gave him a whole extra ½ lb of penuche fudge so he wouldn’t bring out his knife and start swinging.

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Yes, Psycho feels right.

Bathroom again, but I stop to remove the pebble in my sock. But there is no pebble. What is that annoying feeling? And that one, the sudden sharp, jab in my left arm? And that one, the squeezing and releasing of my abdomen as if my stomach were in a vise? And here are those weird ear noises again- has my body been taken over by aliens?

That’s it! Invasion of the Body Snatchers!ID-100126087

That is definitely the horror movie that best describes my MS. It all makes sense now- aliens have taken over and turned me into a screaming, psychotic zombie living in a deep fog.

Finally, having this serious question answered and finishing up likely my tenth trip to the bathroom, I try again to remember what I was supposed to be doing. Oh right, the dishes.

I shuffle back and plunge my hands into the now cold water. As I do so I feel awkward and completely out of sorts. I am tired and clumsy and blinking from the glare of the setting sun. Funny how images of The Creature from the Black Lagoon begin to cloud my foggy, psychotic brain.

If your MS was a horror movie which horror movie would it be???????scarymoviecollage

Want to know something scary???  

MS Madness! A “Giggle More, Cry Less”Story of Multiple Sclerosis was named Indie Authors Library’s most popular book of September!  

Thank you to all my readers and Facebook friends who voted.  If you haven’t had a chance to check it out yet, give it a read.  

Giggles are guaranteed!

Happy Halloween from Myron, the myelin munching monster!
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Why I’m Voting for Snow Miser

Multiple Sclerosis and the politics of temperatureID-10012725

Last winter was a snowy, icy, super cold one.  People complained all over Facebook and threatened to pummel anyone who complained about the heat in the summer.

I, for one, never once complained about the winter and insisted I had reserved my right to grumble about the July/August heat all I wanted.  But I’ve been good and stayed away from voicing my weather preferences.

But it’s been hard, especially when people, probably the same ones who complained during the winter, try to compare their discomfort in the heat with mine.  Trust me folks, It’s not the same.

Your misery is extreme discomfort.  My misery is misery.

Here’s a common dialogue-

Person, “how’ve you been?

Me, “ok.  Had a difficult time during the heat wave last week but am better now.”

Person, “Everyone had a difficult time during the heat wave.”

Really?

Let’s compare shall we?ID-100136480We’ll start with a point of reference.

Multiple sclerosis makes all extreme temperatures a problem.  I wrote about my difficulty with the cold and losing power after a blizzard a few winters ago.  The post was titled Could Be Minutes, Could Be Days and in it, my biggest lament was not being able to have my treasured hot tea to help me through.  A fierce winter storm attacked and hot tea was the main thing I was whining about.

True, I can’t fall asleep if the temperature in my bedroom is below 73 degrees and if I don’t have hot water I go unclean until I do; cold water in a shower feels to me like being stabbed with hundreds of sharp needles.  I get enough of needles taking my meds thank you very much.

And perhaps I’m lucky that I work from home; if you can call these weekly scribbling and promoting my book, work.  (Subliminal message- MS Madness!  buy, buy, buy.)

If I happen to venture out after a storm I do have to watch my footing on icy sidewalks, sidewalks that I am lucky to have shoveled by other people.

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I’m Mister White Christmas

I’m Mister Snow

I’m Mister Icicle

I’m Mister 10 below

Friends call me Snow Miser

Whatever I touch

Turns to snow in my clutch

I’m too much

From Snow Miser, in “The Year Without a Santa Claus”

So to recap- with the cold I have trouble falling asleep, can’t shower with cold water, have to be careful outside and if I don’t have power, can’t have my daily hot treat.

Now let’s look at the problems with the heat.

When the heat ramps up, everything MS wise ramps up too.

The fatigue becomes beyond belief, beyond able to manage because if I’m overheated I’m not sleeping at all.

The cognitive issues become unbearable.  I can hardly think at all.

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My lack of balance issues and loss of coordination issues greatly increase.  Everywhere I move, inside, outside, up stairs, down stairs I’m likely to fall.

I have trouble breathing and often feel like I might pass out.

What usually feels like 5 lb weights added to each leg whenever I move suddenly becomes 25 lb weights.  Thus, what are usually mild aches become downright pain.

My bladder becomes even more obnoxious than usual whether or not I’m hydrating properly.  I tried extra hydration and less hydration during the last heat wave and neither helped the bladder issues.  In addition to having to go more than ever I also covered myself with bruises from walking into the walls in my rush to get where my bladder needed me to go.

So, with extreme cold comes trouble falling asleep, no showers, no tea, trouble walking outside.

With extreme heat come no sleep, trouble walking everywhere, no thinking, trouble breathing, pain, bruises, and lots more increased bladder ridiculousness.

Maybe it’s just me, but I kind of like breathing.  And thinking isn’t too bad either.

All of the above that comes from the heat occurs even in the A/C.  The A/C helps but doesn’t solve the heat problem.ID-100171914

Funny, but the A/C does helps with the cognitive trouble as while I’m miserable the one thing I’m clearly able to think about is my cash flying out the window towards the electric company with every troubled breath I take near the unit.

For people with chronic illness there are heat remedies.

There is a cooling vest I can use.  Problem is, it is wicked uncomfortable and heavy in the house and if I wear it outside I could get shot as I look like a suicide bomber.Picture 27

I had a cooling tie once but that just cooled my neck while the rest of me overheated and then I had no equilibrium whatsoever and was even more confused.

I do have a cooling cloth that may actual work.  The problem with that?  During the heat wave I didn’t remember that I had it!   I only remembered it just now as I’m typing.

(Don’t worry.  I took a break from writing, dug into my closet, found it and will hopefully know what it is when the next heat wave hits.)

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I’m Mister green Christmas

I’m Mister Sun

I’m Mister heat blister

I’m Mr. 101

…..

They call me Heat Miser

Whatever I touch

Starts to melt in my clutch

I’m too much

From Heat Miser in “The Year Without a Santa Claus”

Seriously, which would you prefer?

A white Christmas or a green one?

An icicle or a heat blister?

Something important melting and disappearing all together or turning into a ball of snow? A ball that you can maybe use to defend yourself if necessary or eat if you are hungry.  They don’t make delicious snow cones for nothing friends!

I live in a free country and I can prefer the cold of winter over the heat of summer if I want to.  I can even talk about the differences of each on Facebook if I want. Yet, too often people are inclined to minimize my input, challenge me or outright argue.ID-100206611If you ask and I tell you about my problems with the heat, please don’t tell me you can relate; not unless the heat makes you physically unhealthy.

And please don’t judge me if I prefer the negatives that come with Snow Miser over the negatives that come with Heat Miser.

Snow Miser just works best for me and that’s all there is too it, winter, summer, spring or fall.  But you can prefer Heat Miser if you’d like, even if I don’t quite get why you do.

Here’s the thing.  Nobody’s perfect and I don’t think for a second that Snow Miser has the answer to all my temperature troubles.   He alone, cannot save me from ongoing woes.  Heat Miser’s not without his own charms but me, I prefer the other guy.

Speaking of Snow Miser and Heat Miser, is it my overheated imagination or does Heat Miser’s crazy hair remind you of a certain Presidential candidate?

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This blog post is dedicated to all the people in the United States that are so hot all the time that they even appear red on a map!

Snow Miser lyrics are from FM Static

Snow Miser image from en.wikipedia.org-Snowmiser74shawn.jpg

Heat Miser lyrics are from Thousand Foot Krutch

Heat Miser image from watchmovies90s.com

Donald Trump image from politicalhumor.about.com

Super Balls

Multiple Sclerosis investigates Deflate-Gate

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I went there.  I did.  I went to the topic that has been on the minds of Americans for the last twelve days or so; the topic that has everyone in the country sick of jokes about players and their balls.

The reason why I felt ballsy enough- yes, I did it again- to write about this topic is trifold.

  1. I’m from New England and so I have a very close and important perspective.
  2. I’ve tried and tried but just don’t get football. The game is completely confusing to me. I blame it on MS.  But then again, I blame everything on MS.

And,

3. I saw an interesting multiple sclerosis take on this whole scandal.

But then again, I see a multiple sclerosis take on just about everything.

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I didn’t pay much attention to the story at first.  But then when it was all over Facebook, I started to follow it.  In case you are as clueless as I usually am, the basics are as follows;

The New England Patriots won a football game that was so big, it meant that they could play in the Superbowl.  The team they beat was from Indiana, the bolts or colts or dolts or something.

After the game, there were rumors that the Patriots had rigged the game by under inflating the footballs they used.  Some say this was considered cheating and gave the Patriots an unfair advantage.  They were reported to the big sports people who are supposed to sort everything out when scandal breaks.

Everybody expressed an opinion while they waited for the guys in charge of all the balls to respond.

The coach said he had nothing to do with how inflated or not inflated the footballs were supposed to be.

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The quarterback just flashed his adorable smile and then showed a picture of his gorgeous wife and so all watching became enthralled with their beauty and stopped listening to what he was saying.

But for me, my concern was for the footballs themselves.  No one was talking about how they felt.  No one asked them, the the subject of the controversy, what had actually happened.

Oh sure, people talked to the experts, the ones who were responsible for taking care of and protecting the balls.  But no one seemed to have a clue about how the balls really felt or what it was like to live as a football.

I could relate.  It reminded me of how I feel sometimes with my multiple sclerosis.

Say there is something I am excited about, a party or a game or something like that.  I build myself up.  I prepare and inflate my mind and body to the best of possible circumstances within my control.  I do everything I can to take care of myself and rest and to look pretty and to be prepared for whatever the event will throw at me, throw pun intended.

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I get to the event pumped.  And then, as more and more people approach me, talking to me, tossing suggestions at me, asking things of me, against my best intention, I start to come down.  I want to stay my best, I truly do.  But sometimes multiple sclerosis has other ideas.

Little by little I get weaker and as my legs and back start to ache, I can get smaller too.  But the end of the event it is possible that I have deflated to a soft, wimpy, useless mess in the corner of the event, no longer what I was when I first arrived, no longer as capable as I had been and no longer as able to do what is expected of me.

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And it can upset people.  Especially since I still might basically look the same and they can’t tell that anything is wrong with me. That’s when the judging begins.

What’s wrong with her?

Why is she so tired?

Why wasn’t she at her best?

Why wasn’t she able to do what was expected of her?

Why can’t we count on her?

If she is so sick, why does she look the same?

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These folks might inquire.  They might ask the experts and the doctors what is wrong with me but usually they won’t accept the responses given.  It is easier to assume there is a scandal or cheating aspect involved.

She probably didn’t take her meds.

She probably took too many of her meds.

She is probably just being lazy.

Her doctors are probably useless.

Maybe her doctors are really doing nothing and scamming her insurance company.

And all the while, these folks aren’t asking me, the innocent, what is really going on.

Can you relate?

Can the footballs at the heart of this scandal relate?

And I don’t even have a talented, beautiful, super couple to defend me.

All I’m saying is let’s take a step back and look at the big picture- if the balls hadn’t lost air as they were exposed to the violence, the elements and the rumors, would anything have changed?

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At the very core of the footballs, if they happened to lose a little air along the way, would the players, families and friends who love them, love them any less?

Maybe it’s time to learn what matters and what doesn’t.  As the balls taught us, show up and do the best you can with what you are given.   And hopefully, friends and family, players and coaches, will make the best out of what you are able to offer them.

No scandal needed. No insults, rumors or drama.  Just have faith that when your balls tell you they are doing the best they can, or are or are not as big as they’re supposed to be, it’s how they’re are treated that really matters.

You may say I’m crazy.  And maybe I am.  But I no longer care.

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There’s a big, super game coming up and that’s where the real focus should be.

As a New Englander, I’m going to do my best to be as supportive of the balls as I can be.

Especially since I don’t really get their job. And since I may not be completely inflated myself, I’m just going to trust that they mean well and are doing their best.

If this whole situation has taught us anything, it’s that we need to protect our balls.

Truth is friends, I’m so clueless I will have no idea if they are doing their best or not.  And I may bore easily and change the channel.  But in my NE/MS heart, I am rooting for them and saying come on NE, do the best you can with the balls you are given!

Dear friends, please remember that my blog posts are tongue in cheek and I’m not afraid to get a little silly to try to make you giggle.  Whoever you are rooting for on Super Bowl Sunday, have a great game!

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The Curious Case of Multiple Sclerosis Part 5

Bored as a Board

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When I was growing up, my mom or my dad, my sister, my grandmother, someone in my life used to like to say, ”if you’re bored, you’re boring.”

This phrase has been ingrained on my brain since then. I want to do everything I can to not be boring, although I may be losing the odds on that one, and so I have a ton of things to do that keep me from being bored.

I have my regular “to do” lists.

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I have my writing “to do” lists.

I have my “want to read” lists.

I have my “want to watch on TV” lists.

I have “my various, fun ways to get exercise” list.

I live right near a beach for goodness sake!  Just watching the ocean waves change in shape and strength is pretty exciting on its own.

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And then there are the tasks my day is not complete without- catching the weather report, playing SongPop on Facebook, reading my Bible, checking in with my friends to see how they are and so on.

The point being, I have no reason to be bored, ever!  And not just because of things I should do or need to do, but because I have a ton of things that I want to do.  And considering how MS robs us MS’ers of precious hours in our day, I should be pretty busy during those hours.

Nonetheless, just the other day, I commented that I was bored.  How’s that even possible???

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I hesitated to tell anyone this, except for all you readers and those who may randomly come across this post in a basic internet search, for fear that what I would hear back is, “if you’re bored, you’re boring.”

It made no sense that I, a person who basically needs 10-20 hours of sleep a night, and who has a ton of things she WANTS to do, and who is always complaining about never having enough hours in the day, should ever find herself bored.

I was so bored in fact, that I looked up the word.  Two synonyms of the word are fatigued, tired, and inattentive. Ok, that’s actually three synonyms but my brain was too inattentive to do that math correctly.

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This in depth internet research was actually helpful.   Even though I probably would have blamed my boredom on MS anyway, as that’s what I always do when something annoys me, the online definition made it legitimate to blame multiple sclerosis.

If the words fatigued, tired and inattentive don’t prove that this state of being is the fault of multiple sclerosis, than what does?

I researched more even though I was exhausted and all I wanted to do was lie down flat and stay that way, which made me picture an actual board.  I was, officially, bored as a board and it was MS’s fault.

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Leave it to multiple sclerosis to have yet another frustratingly, contradictory aspect that I like to call “curious.”

MS greatly zaps time from an MS’ers day due to how much longer it takes us to do the most basic of things and how much extra rest we need.  Yet in the few hours you have left in your day MS can cause your brain to become so unhinged, so completely devoid of any activity, that you have no motivation to do anything you want to do.

(For the record, antonyms of the word bored include energized, exhilarated, refreshed- not MS words at all.)

So being bored when you’re not bored and have no time to be bored is another curious case of multiple sclerosis.

But what to do about it?

I searched more and found that BuzzFeed Life has a list of 17 Things to do when you are Bored Out of Your Mind written by Leonora Epstein.  What was on the list?  Make more lists!

How is that helpful??  I already have lots of lists.  Also among the ideas were do a puzzle or plant an herb garden.  Clearly this list was for people with just regular old boredom.  It was not designed for people with the mega boredom that comes with multiple sclerosis.

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I needed to know how to combat this useless, brutal time of nothingness that MS seems to insist I use to waste what little of my day that I am given.

I needed to know things I could do that didn’t require any real brain function at all.

So I started a new list, a list of 18 Things we who have MS can do when we are bored-

Sit Still

Lie Down

Jiggle your right leg up and down

Jiggle your left let up and down

Look at the ceiling

Breathe

Look at the picture on your wall

Look at your hands

Look at your feet

Pull up your socks

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Look up the word ‘boredom’ on your computer

Swivel in your swivel chair

Rock in your rocking chair

Open the curtains and look out the window

Close the curtains and sit back down

Wonder how the spider got in your bedroom

Count this list to see if there are really 18 things to do listed

Look for lint on your living room rug

(NOTE-don’t even try to collect the lint, that is a project for when you are not bored!)

Feel free to use my list whenever you want readers; I’m all about helping others.  I want to do my part to help make sure that MS or not, you are never bored.

Because supposedly, “if you’re bored you’re boring…”

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Image Credits

Ocean foam image courtesy of artur 84 at FreeDigitalPhotos.net

Question mark image courtesy of Master Isolated Images at FreeDigitalPhotos.net

Busy woman cartoon images courtesy of jesadaphorn at FreeDigitalPhotos.net

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All five other images courtesy of Stuart Miles at FreeDigitalPhotos.net

 

Still a Little Lazy

Too Lazy Even for Me Makes an MS Comeback

 

The plan was to post a brand spanking new (where does that weird expression come from anyway?) blog today.  It really was.  Especially since the last two blogs have been repeats.  

But then important things got in the way like visits with friends, a big Bruins win, Facebook, Christmas preparations, church, MS fatigue and the Season 1 True Detective DVD rental from the library.  

In the balancing act of multiple sclerosis that we MS’ers do all the time, well a brand new blog got pushed off the list.  I was just too tired.  And maybe a little lazy after all those delicious Christmas sweets.  

Which got me thinking about a blog I wrote in 2012 about just how lazy we, as a human race, can be.  

And so I decided to repost this blog from 2012.

 And I promise, no I SWEAR, that I will post a brand new blog NEXT week.  As long as I have finished drooling over Matthew McConaughey in this riveting new drama…

Too Lazy Even for Me

 

So I know that I mention (complain, whine, lament) here a lot about the extreme fatigue that comes with MS.   But it is a fact and with this fact, comes the fact that many an MS’er has learned to take shortcuts to save energy.

Most of these shortcuts involve skipping unnecessary tasks.   Some MS’ers are pretty good at this.

Me, I’m still learning.

Even though I skip watching TV commercials as much as possible (especially in an election year- so glad THAT’S over), I was drawn to a particular commercial recently.  I think what caught my attention was that the commercial started by asking the question “how many buttons does your car have?”

I had never really thought about it.  My car is a paint chipped 2005 Toyota Corolla that has served me well since I bought it pre-owned in 2004 (don’t ask.)

With the exception of the incident where a tree fell on it during a freak winter storm (another don’t ask but now you have the root of the paint chip problem,) I have been very happy with it.

It has buttons but I have never counted how many.  I just push them and go.

 

The commercial was for a 2013 Cadillac XTS and the reason why the commercial was asking about buttons was because this new model of Cadillac has far less buttons than your average vehicle.

The car has sensors that tell the car’s control panel (essentially its dashboard) everything that is happening on the road around you.   It has a Cue which means it can give you infinite listening features as well as unlimited access to all your contacts.

It can connect up to ten different Bluetooth devices and it has Natural Voice Recognition so that you don’t even have to lightly touch the control panel, you can just tell the car what you want it to do.

You can buy this car and go from a few buttons that you have to manually push in your current car to this car where you don’t have to move at all!

 

Maybe it’s me, and keeping in mind that I am all about conserving my energy, but I can’t help thinking that if I am too tired to push a button, then I am probably too tired to be behind the wheel.

Arms too achy to maneuver the steering wheel? Perhaps I don’t belong behind the steering wheel at that particular time.

Only a day after seeing that commercial, a friend sent me an email warning about a problem with newly issued credit cards.  All you shoppers out there, take note.  It seems without you even requesting it, credit card companies are issuing new cards that have a teeny tiny wireless symbol on the back of them.

 

What this means for you is that you no longer have to stress yourself out with the tedious task of swiping your card thru the credit card machine when you purchase something.   You can just pull your card out of your wallet and the WIFI signal will tell the credit card machine all your card info.

Thank goodness!  After a long day of hitting the stores, that little swipe at the register completely does me in.

Again, maybe it’s me, but I am thinking that if I am too tired to be swiping my card for a whole two seconds when I buy something, maybe I shouldn’t be shopping.

Let’s see- I’d really love the new Cadillac XTS but I am just too exhausted to swipe my card.  Oh, I can just hold my card while I walk by the machine.  Great- let’s do it, the Cadillac is all mine!

I received the email warning because, (surprise surprise,) thieves have learned how to use these new cards to steal from you.  They just hold up a flat screen as you happen by a credit card machine and they are good to go.

 

On the days when my fatigue really sets in, if you don’t know me or my MS you could try to call me lazy.  (Try it all you want but I bet I will suddenly find some energy to belt you.)  But in my super long list of things that are exhausting, pushing a button and swiping a card don’t come up.

If they could make a gadget that automatically gives you a shower, puts on your clothes and make up, and styles your hair, I might be interested.

How about a gadget that cooks dinner AND washes the dishes?    Now you’re talking.

If I could recline on my sofa resting my very achy body and just tell a gadget to do the laundry, I might get excited.  I’m not too particular, I would even understand if I had to push a button to activate the thing.  As long as I didn’t have to push the button more than once or push it too hard, I’m all for it.

 

Hey Salt-N-Pepa, the eighties are over, we don’t have to push it anymore.

Unless we want too of course.

Have a fabulous New Year dear friends!!!

 

 

12 Days of Christmas, MS Style

A multiple sclerosis Christmas carol

 

As you finish up all your last minute holiday preparations, please enjoy last year’s Christmas ditty.  And some fun giggle induced cartoons as well!

I love Christmas.

I love Christmas songs.

But personally, I don’t love the 12 Days of Christmas carol.  I find it obnoxious.  Recently however, I learned that it was actually an important and secret song.

 

Folklore has it, that this carol was written in the late 1700’s in England as a code to help children study their catechism as Christianity was forbidden at the time.  A partridge in a pear tree represents Jesus Christ, two calling birds represent the apostles Peter and Paul, three French hens represent the Holy Trinity, etc.

Weird, as my grandmothers always taught me that the Holy Trinity was Portuguese, but what can you do?

As a devout Catholic who totally gets the reason for the season, I feel bad calling the song obnoxious when is seems like it should be something to be appreciated, even just slightly.

 

Kind of like how there was a brief time when I actually appreciated multiple sclerosis.  And by brief I mean minutes, no, actually seconds.

This was when I received my diagnosis after I had diagnosed myself via the internet as having either early onset Alzheimer’s disease or acute and untreatable insanity.  MS was actually a relief at that moment.

Now it is just absolutely obnoxious and that is on one of its very rare good days.

Since I am in the Christmas spirit all year long (but now that it IS Christmas, it is ok to be in the Christmas spirit) I thought I would combine the two.

 

So here friends, is a multiple sclerosis Christmas carol, obnoxiousness and all.

On the first day of Christmas MS brought to me: one ach-y bod-y

On the second day of Christmas MS brought to me: fingers all tingly

On the third day of Christmas MS brought to me:  three MS hugs

On the fourth day of Christmas MS brought to me: lots of blurry vision

On the fifth day of Christmas MS brought to me: brain completely spacey…..

On the sixth day of Christmas MS brought to me: every day so sleepy

 

On the seventh day of Christmas MS brought to me: feeling kind of dizzy

On the eight day of Christmas MS brought to me: bladder very leaky

On the ninth day of Christmas MS brought to me: four shots so nasty

On the tenth day of Christmas MS brought to me: head feeling crappy

 

On the eleventh day of Christmas MS brought to me: legs acting lazy

On the twelfth day of Christmas MS brought to me: balance not so steady-

legs acting lazy, head feeling crappy, four shots so nasty, bladder very leaky, feeling kind of dizzy, every day so sleepy, brain completely spacey, lots of blurry vision, three MS hugs, fingers all tingly, and                   one, ach-y bod-y…..

Let’s sing it together, shall we?

NOT!

Ahhh friends, a very healthy and Merry Christmas to you all.

And for my non- Christian friends, may you have a healthy and happy season of all things good and not MS related!

 

*******Note*******

I wrote this particular blog over the weekend of 12/13/13-12/15/13- I swear I did.  On 12/18/13 a friend and fellow MS’er posted on Facebook something similar that was attributed to the Must Stop MS Support Group.

I am very, very sure I didn’t copy them but it is possible that in years past I got this idea (the 12 Days of Christmas MS version) from somewhere else and just don’t remember it.

I would like to think instead, however, that great minds think alike!

If that doesn’t work, I will blame using an idea used before on MS.

Yea, that’s it.  If I subconsciously stole this idea it is all MS’s fault!

 

Lawbreaker

Multiple Sclerosis goes criminal

 

When I typed the title of this blog post I was saying to myself, laaaaaawwwww breaker, using a Matthew McConaughey legal thriller voice.   What does Matthew’s southern accent have to do with this blog?

Nothing, it’s just how my brain works.

So here’s a question, if multiple sclerosis is criminal, and I’m pretty sure it is, why do its victims have to serve the time?  We didn’t do the crime.

 

I’m sure if we thought about it my MS friends and I could find some MS criminals worthy of doing the time; like say, the person who asks how you are and then proceeds to diminish your answer by telling you that they have your symptoms too.

Or maybe people who repeat the same thing over and over even as you tell them that thing doesn’t solve your issue.  (See a future blog post on that one- I have a couple of stories involving those types that I will be sharing in the future.)

 

And then there are the useless, unfriendly folks at the insurance companies- they should definitely do some time.

This summer I was at a public event and was talking to a nice retired couple.  When the subject of my MS came up the wife sympathized and then told me that her son-in-law had recently been diagnosed as well.

I expressed concern for him and how he was doing. It was then that she asked me if MS had ever turned me into a criminal!!

 

Seems in addition to his diagnosis, this relative had started absconding funds from his company, committed tax evasion and had become abusive to his family.

How best to answer this question?

I told her that MS can affect a person’s judgment and it’s a very expensive illness that might possibly leave someone desperate.

I told her that with MS comes vicious mood swings and I hoped that their family was getting the help they needed.

I also told her that everyone is affected differently and there is so much about multiple sclerosis that we don’t know that it is hard to speak for someone else.

“But has MS ever made you commit a crime?”  She persisted.

“Well no,” I admitted.  Like I would have said yes if it had- I’m not that brain fogged!

“I knew it!” She exclaimed.

 

Turns out that she wasn’t very fond of her son-in-law and the criminal behavior wasn’t new. What was new was that he was now trying to blame it on MS.  That’s playing the MS card in a whole new way!

But then, a few months later, MS DID cause me to commit a crime; drug dealing to be exact.

Here’s how it went down.  An online friend with MS had somehow accumulated several months of Copaxone, a very expensive MS drug.  It was the wrong dose for her and because drug companies get easily confused and red tape moves very slowly, they kept sending it to her even though she couldn’t take it.

As time went by she wound up with several unusable doses of this stuff worth approximately $35,000.  When the drug company FINALLY got her prescription right, she asked what she should do with the medication she couldn’t use.  The company told her they couldn’t take it back and she should just throw it away.

That seemed very wrong to her and so she called her neurologist for advice.  He told her the same thing; by law all she can do is dispose of it.

 

Imagine throwing away $35,000 of cold hard cash in the dumpster?  If I knew that someone had done this, germ-a-phobe or not, I’m going dumpster diving for sure!

My friend had insurance but knew that many people don’t and that even for those who do, copays for drugs like Copaxone are outrageous. She asked if in my travels online I could inquire if anyone could give these meds a proper home in their fatty tissue.

I certainly would have taken them off her hands if only it was my MS drug.  But it was not.

Being the helpful person I try to be and agreeing with my friend that throwing this stuff away was just asinine; I posted on two Facebook groups about the availability of these meds.

We weren’t even trying to sell them.  We were trying to save the planet and a fellow MS’er by not wasting what should definitely not be wasted.

But as soon as I posted this super relevant, super helpful announcement, the administrator of one of the FB groups told me that she had been flooded with comments pointing out that sharing medication was illegal and I was posting illegal activity on Facebook– a definite social media no-no unless you hide it in weird code that only you and fellow criminals understand.

 

I greatly thanked the administrator; I’m way too much of girly girl to handle prison well.

I took the posts down and hid in my closet while I waited for the feds to show up. Thankfully, they never did.

My near collision with the law just happened to take place the week before Election Day.  I went to vote.

 

At the polling station I pondered the ballot questions.

And I felt disgraced.

Not at the fact that I almost broke a law/broke a law but that the law was just incredibly ridiculous in the first place.

Yes I can fathom the reasoning behind it; you don’t know if the medication was tampered with, someone could decide to change their dose based on what was available, people could stop taking their meds in order to sell them, people might be inclined to unload expired meds which could be dangerous, etc.

But still, $35,000 worth of needed meds going to the trash is just wrong.

I wondered if there was a way to make a new law, one that would set up a safe resource center for medication.  Perhaps there could be a database where people could register their prescriptions and the center could examine them to make sure they were still good before sending them on.

I thought about making a new law and writing it in on my ballot.

 

Then I remembered that’s not how it works.  I watched Schoolhouse Rock as a kid, I know how a bill becomes a law.

It all seemed possible.

And then the fatigue set in and it all seemed overwhelming.

So while I did vote, that was all I was capable of that day.

But I can still think and who knows, maybe one day, I can come up with a plan and then a law to prevent such wastefulness.

Until then, I guess I’m just glad I wasn’t arrested…

But if I was, maybe I could use MS as a defense???

 

 

Getting Older: A Good Thing?

A multiple sclerosis guest blog by Jennifer Digmann

primative selfie 001

Ahhh friends, autumn is here and I couldn’t be more thrilled!   The weather has been just perfect and I am so happy that I have been outside a bit, picking up some natural vitamin D.

I have been enjoying this time of year so much that I didn’t leave much time this week to write a new blog.  I was just going to offer up an oldie when new friends, Dan and Jennifer Digmann came to the rescue.

 

I met Dan and Jennifer on Twitter recently, a social media site that I only moderately know how to use.  Luckily, Dan knows how to use it and he tweeted me about my blog and then I tweeted back and tweet by little tweet, I got to know him, his wife Jennifer and their awesome work.

 

Dan and Jennifer have been married for 9 years and both are living with multiple sclerosis.

And while that seems like a huge cosmic cruelty to have both a husband and wife struck with this sucky illness, it was actually MS that brought them together.  They met at an MS event titled “Finding Your Buried Treasure.”

 

How cool is that?  I bet neither expected their buried treasure to be a spouse.  I am officially making more of an effort to get to more of these events!

I have been to a few and have met many wonderful people but I have yet to find a husband at one- perhaps I am not looking hard enough?

Anyway, Dan and Jennifer totally rock!   They regularly write about their experiences on their blog on their own website       www.danandJenniferdigmann.com and on the website Healthline where they also blog.

Thank you so much Jennifer and Dan- so glad to have made your acquaintance.

For your reading pleasure, dear readers, please check out Jennifer’s thoughts on an upcoming birthday.

Yum-cake!

Yum-cake!

 Getting older: A good thing?

by Jennifer Digmann

I turn the big 4-0 in less than forty days and there has been a doom-filled cloud following me for, oh let’s say, the last 320 days or so.

There is a daily countdown to the big day, November 6, on my refrigerator. This age has been hanging over my head because up until now, getting older always has been followed by a great life-altering event.

Think about it: you start driving when you turn 16; vote at 18; and drink (legally) at 21.

Even turning 30 was fantastic because that was the age when Dan and I got married, and it seemed my life really began.

 

But I am a little more than a month away from turning 40, and I can’t stop thinking that it’s just downhill from here. Forty is just plain O-L-D, and so am I.

I posted this #TBT picture of Dan and me on Facebook a few weeks ago, and my aging was noticed. Our friend Michelle commented, “Look at those fresh, young faces!”

Ouch!

Normally, I probably just would have smiled and forgot about it, but being close to turning 40, the comment stuck with me. I’m not ready to get old.

Recently as Dan and I drove to our Multiple Sclerosis (http://www.healthline.com/health-slideshow/multiple-sclerosis) support group meeting, we talked about that subject. I was lamenting about getting older when he asked about my 30s.

 

“Ah, such good times,” I waxed nostalgically. “We were married, moved into our house, I finished graduate school.”

“Yes, Jennifer, but what else?”

Whether intentional or not, I began seeing what Dan was getting at and began looking at my 30s through less rose-colored glasses.

“Well,” I thought, “39 hasn’t been all that great, especially with Trigeminal Neuralgia and my Gamma-Knife surgery not working as well as I hoped. And I haven’t driven or walked in this decade.”

With all the good stuff, this decade also kind of sucked.

 

And maybe that’s what Dan was getting at: in life you always have to take the good with the bad.

Perhaps it was just his sage wisdom that comes with age. After all, he just turned 42!

This conversation got me thinking about the promise of the new decade and the opportunities it has in store for me. But these opportunities won’t happen on their own. I need to take control of what I can. (link to http://www.healthline.com/video/managing-multiple-sclerosis).

I’m realizing I’m finishing my 30s to position myself for greatness in these once-feared 40s. I have started aggressive physical therapy that is focused on building my core strength and increasing my range of motion. I also took the necessary steps to begin Rituxin, a more-advanced treatment to control my MS.

All of this is very empowering and fills me with hope.

Maybe turning 40 will be better than I thought.

 Happy pre-Birthday Jennifer!!!

80s kids

 

 

 

An MS Doodle Dandy

Multiple Sclerosis patriotism

 

With the exception of my late teen/early 20’s years, I have never been much of a rebel.  I grew up with this intense need to please and so when someone tells me to do something, I do it.

I floss daily.

I get my car’s oil changed every 3500 miles.

I pay my taxes BEFORE April 15th.

I wait ten hours after eating before swimming.

About the only rebellious thing I do these days is consume raw cookie dough against the advice of both the raw dough packages and that of my older sister.   But I try to do that in the privacy of my own home so as not to offend anyone and I do feel bad about it, kind of.

This sense of doing the right thing carries over into being a good citizen, even when MS makes me feel wiped out and yucky.

I suppose if I was really a great citizen I would have skipped my brief rebel years and joined the military.  The only problem with that was the fact that I am total wimp and wouldn’t have lasted one day in boot camp.  So hats off and deep, deep gratitude to those brave folks who defend our country!

The least I can do to be a good citizen is to vote.  I understand how government works; I watched Schoolhouse Rock when I was kid.

 

(I’m still totally furious that Conjunction Junction beat out I’m Just a Bill for the number 1 spot in a recent special featuring all the episodes.  I demand to know who voted for that!)

So on primary day I put on my goody two shoes and headed off to the polls.  It didn’t matter that not many people bother to vote in the primaries.  I was going to because it’s a privilege and it’s my patriotic responsibility to honor that privilege.

I even did research on who to vote for.  And by research I mean I asked my very smart friends who have ideals similar to mine who they were voting for and then I voted for that person too.

 

(And I did watch a commercial or two- I try to take this voting thing seriously.)

Luckily, my town is small and since it was only a primary the polls weren’t too packed and I didn’t have to stand too long to cast my ballot. But my civic duty was not done for the week.  The next day I had jury duty.

Honestly, I wouldn’t mind serving on a jury. I actually think it would be interesting.  I just can’t imagine any lawyer would trust me on a jury with all of my cognitive issues and my extreme fatigue.   But being the good citizen that I am, I would let the court make that decision.  I was happy and honored to do what my government asked of me.

 

The problem was, this was a lousy week to have to serve.  I had a lot going on and precious few non exhausted hours to do them in.  Of course, I didn’t know this would be the case when I got my notice, the notice that gives you the option of postponing jury duty.  Being on the road by 7:15 the morning of, standing in long lines to be processed, and waiting long hours in a hot stuffy courthouse was just not conducive to my life and my MS that week.

But it was what it was and I would just have to do my best.  I took comfort in the fact that I had one of those ‘call the day before’ notices.  Every time in the past when I received one of those, I never had to actually go in.  I would call the automated line the day before and an automated voice would tell me I was excused.  That’s what would happen with this jury service, it just had to.

When people who don’t have MS say they don’t understand ‘brain fog’ or ‘cognitive difficulties’ you are usually too fogged to explain it to them.  So allow me to do it for you.  The following is what brain fog looks like:

At 4PM on the day before my service I called the courthouse.  The instructions were clear- do not call even one minute before 4.  To be on the safe side, I waited until 4:02.

The automated voice thanked me for being a good citizen and calling.  Then it informed me that all jurors with groups numbered 0- 58 had to report.  I had been assigned group number 0060.  I had to go.

I was distressed.  I absolutely could not believe it.  How on Earth would I get through this crazy week with jury duty smack dab in the middle of it?

 

I thought perhaps I made a mistake.  I called again.  And again, was thanked for my service and told that all jurors in group numbers 0-58 had to report.  I was resigned to my patriotic fate.  I would just have to suck it up.

I postponed that evening’s shot so I wouldn’t face the horribly achy side effects during jury duty.

I went to bed super early.

I set two alarms to get up on time.

I stopped on the way to get some much needed caffeine.

And I stood with my burning legs in the long check in line, chatting with other potential jurors.

When it was my turn to hand in my summons, the court officer pointed out that I hadn’t needed to report at all.   WHAT??

Didn’t I call the automated number, he asked?

“I did.  It said all jurors with group numbers 0-58 had to report.  So at number 60 that means me, right?”

The frustrating thing about ‘cog fog’ is that once your brain makes a mistake, even a simple counting mistake, your brain then accepts that mistake as correct.  So even though I have known how to count since first grade and I called TWICE, I still screwed up.

I’m such a dedicated citizen that I showed up for jury duty when I didn’t even need to.

 

The court officer told me that my service was completed and kindly sent me on my way, probably noting my name and number for next time to tell the judge “this chick is way too dumb to serve, she can’t even count to 60.”

The good news was that I got back the badly needed day in the middle of the week.

The bad news was that I was so frustrated by my mistake that I wasted a lot of that day stressing over it.

Before I knew it the night passed, and when I turned on Facebook the next morning I was reminded of the date.

It was 9/11, a date no American will ever forget.

The date got me emotional.

It got me sad.

And then, it got me proud.  I started thinking about the amazing country I am lucky to live in.

 

I started humming Yankee Doodle Dandy.

Here’s another way brain fog works, your mind starts wandering down seemingly insignificant paths for seemingly no apparent reason.

I looked up Yankee Doodle Dandy.

Did you know that doodle was actually an insult?  The phrase Doodle Dandy was meant to insult the earliest American patriots, doodle meaning dumb.  But they chose to adopt the phrase instead.

And so it was with me-MS dumb or not, I’m happy to be an MS Doodle Dandy; an MS Doodle Dandy who’s ready for jury duty whether she’s wanted or not.

PS  If you are humming Yankee Doodle right now than you are a true patriot for sure!